A qualitative study on the impact of hemophilia on sexual functioning and well-being in Dutch men

Previous research shows that hemophilia negatively affects sexual functioning and well-being in men with hemophilia. To gain deeper understanding of the impact of hemophilia on sexual functioning and well-being, we conducted this qualitative study. Experiences and needs of men with hemophilia were gathered through focus groups and semi-structured interviews and then thematically analyzed using MAXQDA. Fourteen men with hemophilia (median age 53 years, range 22–71) participated. They reported both hemophilia-specific factors (e.g., bleeding or joint limitations) and chronic disease factors (e.g., pain or self-esteem) negatively affecting sexual functioning and well-being, with differences in the factors and the degree of impact observed based on the age of the men with hemophilia. For instance, older men (aged over 40 years) reported more mental and physical complaints compared to younger men (aged 40 or younger). Many men were uncertain about how to address sexual functioning. Tools (e.g., patient reported outcome measures, information materials, training) to provide and assess information about sexual functioning and well-being, to normalize the topic and to open up discussions between men with hemophilia and healthcare professionals are necessary. Future research should focus on developing tools for this purpose.